At the moment I am struggling with the way that the seizure medication that Ellie is on has changed her. Ellie is normally a calm, (very calm actually) placid, easy, happy baby. Since being on tegretol for her seizures, this has completely changed her. Ellie very rarely smiles any more. For a mother and father this is very hard, she always comes across as sad. Another thing it has done is make her quite agitated. I know we have been told that her body will get used to it... I hope so. As I want my old Ellie back.
From speaking to other mums with kids with WHS, seizure medication is a real trial period, to find the one that works for your child. How long do I trial this one before I say no its not working?? Do you risk changing to another medication when it could just have the same effect on her?? Do you also risk playing around with the medication and create more seizures?? These are questions I ask myself on a daily basis.
At the moment, the way that Ellie is, I find it hard to deal with. I just want my old smiley Ellie back. Is that too much too ask.
Sorry about my venting.... it had to be done.
On a good note, Ellies MRI was done yesterday under general anaesthetic, and we had no seizures afterwards. At this stage we have a appointment with the neurologist on the 14 December. But I am pushing for a earlier appointment. I hate having to wait for results.
I hope the smiley Ellie returns soon. Poor little thing. I hate all these medications, so hard on all of us.
ReplyDeleteMelissa, how sad that the medication has changed Ellie's demeanor. I cannot imagine. I know what it feels like when either of my girls are sick and not acting herself. I cannot imagine that ALL the time. Praying that you guys find a medication that works and brings back Ellie's smiles.
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